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good times, bad times


Guest bobp

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Well the good news first, my grandson was born healthy on fathers day, he and my daughter are home and he is a delightful, mellow baby.

I had a followup CT for my chemo last week and got the results yesterday, mixed news, mild progression of lymph disease, same as previous scan 6 weeks ago, so the Taxotere isn't working, progression on two scans in a row. Whatever they saw on my remaining kidney in the last scan has apparently resolved, so at least I don't have permanent kidney damage.

The Onc says we can try Navelbine or Irinetocan, I am going to take a couple weeks and see if I feel any better. I have been in pain basically ever since my diagnosis 2 years ago and over the last several months it has been getting progressively worse. The doctors don't seem to be able to figure out what is causing me all the pain. I had a bone scan and it was clear. I also had an MRI of the thoracic spine, there is something on it, but they say it isn't cancer. The doctors don't think I need to see a neurologist at this point, but I may ask for a referral anyway.

I also have had digestive system problems, which started with my first chemo last year and have been up and down. It cleared up for a while then while I was on Iressa last year it got bad enough to cause me to stop the Iressa. It cleared up some again and now has returned worse than ever, the Onc doesn't think it is from the Taxotere and the Pain Doc doesn't think it is from the pain meds. All I know is it is debilitating at this point between the pain and stomach problems I haven't worked in months and have used up all my vacation and sick pay. I was working half time for a former business partner who was being very flexible, but I can't expect him to pay me if I am never there. I was told that Stage IV NSCLC should qualify me for Social Security Disability so I went and applied this week, there is a 6 month waiting period even if you are approved and from what I hear they often deny claims, requiring you to fight them to get paid. In the meantime we are living of my savings and my wife's salary.

So the ups and downs of my life continue.

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Bob, first let me begin by congradulating you on your new grandson!!!

I am sorry that the Taxotere dosn't seem to be doing the trick, I hope you have better luck with the next course of treatment. My dad was on Taxotere and just stopped the Iressa today, they just didn't cut it. I am sorry that you are having the stomach problems and pain, and not much help in the way of finding out why or how to resolve them. Good news about the kidney, though.

Your subject title pretty much says it all Good times/bad times. I hope that you are able to enjoy your grandson through all of this, and TRY to concentrate on the GOOD TIMES...

As far as the referral for the neurologist, what the hell, get one...it can't hurt and may be helpful in either easing your mind, or you pain...either way, the benefits may just be worth it.

My mom worked for SSA, and I think you should be approved, although it does take the six months to get approved, keep record of all of your Dr. visits, etc.. and let us know how it goes, in six months that is.

Take care of yourself, just wanted to say "hang in there" and also ask what your new grandsons name is. Deb

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From my experiance with SS-D

I applied March 7 2003 for my mom to recieve it due to her DX os NSCLC stage 3A-B.

She was approved on March 9. Although there is a 5 month wait period before your check arrives. So my mom will get her first SSD check in July. Fortunately her work disability ran into her early retirement (which she applied for in Jan. before dx.) and now that will run into disability

I was told by someone at SS that Lung Cancer is almost always approved of. Its a chronic diesase and to which even if remission hits your never sure it wont come back. Thats SS view anyway.

Try for the SSD it is 5 not 6 months wait period

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bob,

I AM 6 YRS RETIRED FROM SSA. IF YOU WANT YOU CAN E-MAIL ME AND I CAN PROBABLY EXPLAIN WHAT YOU WANT TO KNOW ABOUT SSA DISABILITY. THERE IS ALSO SSI DISABILITY BUT THAT IS BASED ON NEED. IT IS PAID BY THE STATE THROUGH SSA. WHEN YOU FILED FOR DISABILITY THEY WOULD HAVE TOLD YOU ABOUT THAT AND IF YOU WOULD HAVE QUALIFIED THEY WOULD HAVE TAKEN A CLAIM FOR THAT ALSO. THERE IS NO 5 MONTH WAITING PERIOD FOR SSI. IT IS THE DATE OF FILING THAT IF AWARDED YOU WOULD GET PAID UNDER THAT PROGRAM. tHE 5 MONTH WAITING PERIOD FOR SSA IS BASED ON YOUR DATE OF ONSET OF THE DISABILITY. IF YOUR DATE OF ONSET WAS SAY 6 MONTHS AGO THEN WHEN YOU GET APPROVED YOU WOULD HAVE ALREADY SERVED THE 5 MONTH WAITING PERIOD. IF BECAUSE OF YOUR WORKING YOUR ONSET DATE WAS THE DATE OF FILING ARE SOMEWHERE AROUND THAT TIME THEN THE 5 MONTHS WOULD START AT THAT DATE. i USED TO ADVISE PEOPLE THAT IF IT SEEMS SSA IS TAKING TO LONG FOR A DECISION TO CONTACT YOUR LOCAL CONGRESSMAN AND THAT SEEMS TO SPEED UP THE PROCESS..... HANG IN THERE.....

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Bob, congratulations on your new grandson. That has to be a big highlight in your life, that all went well. I am not sure what your digestive problem is -- if it is connected with acid reflux, something like Nexium might help. It helped Lucie through her chemo. Hope you find something that works soon. Don

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I also have gastric problems with Taxotere and have gone to a Holistic Dietician who has me order powder from a company called Metagenitics called "ultra-meal" and additives to make "shakes" and use them instead of a meal for the first few days after Chemo. I add Aloe Juice, Aceodolpholis (sp), Flax Oil and Glutimine to them plus a piece of fruit for flavor and it has helped greatly. I also drink water like crazy for the first few days after Chemo to wash it out of my system.

Regarding the questionable findings in your back, is there any way you can get a PET Scan done. Bone scans have proven to be some what difficult to interpret and the PET right now is a much more thorough scan. It is very expensive (mine was $7,000) but luckily my carrier paid for almost all of it. Done much like a CAT scan and they even did both on me at the same time.

Good luck with your questions and hopefully, feel better. Go online and see about the Metigenics site and if possibly you can get Ultra Meal. No endorsement meant here but it sure has helped me a lot.

Peace and blessings,

Barbara

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